Support for Autism Parents Everywhere

I think I can handle most anything if I get some minimum, viable amount of sleep. I’m not sure what ‘minimum’ or ‘viable’ means in actual numbers, but I know it’s more than I’m getting now. Regardless, when you have a child who either regularly gets up early or gets up in the middle of the night and stays up, sleep is very hard to come by. Autism parenting and sleep are rarely friends.

So recently I once again found myself falling down into the hole of burnout. The accumulation of tiredness got bad. It wasn’t yet as bad as The Great Burnout, but it was getting there rapidly. We held on until we got a sleep-cation last week, courtesy of Mary’s parents. They kept the kids for about a week, and we mostly slept – a lot.

Even after a week of rest, we still felt tired. We got a few things done around the house, but not as much as we had hoped. But we did refuel the sleep tanks enough to hopefully last a while. We were certainly thankful to shut down for a few days.

At the end of the week, I was left with one of those simple, visceral statements of desperate faith.

There has to be a better way.

After our J-Man woke up a couple of nights ago at 3AM, it became abundantly clear that we can’t keep going through this cycle.

J’s sleep will – hopefully – settle down a bit once he gets acclimated to being at home again after his time away, but it’s not like rest is going to magically become part of our lives. We can try to schedule a more lengthy respite two or three times a year, but binge sleeping after a long period of deprivation really isn’t the most healthy approach.

I refuse to accept that we are doomed to this pattern, though. I really do believe there has to be a better way.

There is so much at stake. We have to find a way to become as strong and healthy as we can be in order to have the energy and focus we need to address some absolutely critical needs.

We all have the obvious personal concerns such as getting our children through the day, helping them grow and learn, managing therapies and medications, dealing with school, IEPs, and all those potential issues, fighting with our local, county, and state government agencies to get services, and so much more, on top of one or both parents needing to work in order to have a chance to make ends meet. Oh, and there’s that little thing about our own personal health and mental survival, too.

But there’s a whole lot more we want to do but often lack the energy for. Government entities are regularly trying to change the laws and rules, rarely in a way that helps our children. Policies change or become even more incomprehensible. Budgets get slashed. Our children are discriminated against in places both public and private. Many of us want to write, blog, and advocate. We want to raise awareness about our children’s challenges and make the world a better and more accessible place for them. We want to teach, learn, and grow as parents and adults.

In other words, we want to do more than just survive. We want to thrive, grow, and make the world a better place for our children and all children. We want to fight back against anyone who stands in our children’s way.

Here’s a blinding flash of the obvious. This is hard.

Here’s what I would like to become. I would like to become stronger than the challenges are hard.

We talk about autism being hard and all that, and there is some truth to this. Autism obviously does create a variety of challenges for those who are autistic and those of us who care about and for them. But when I say, “This is hard,” there is no blame to assign either to autism or autistic people here.

Autism has no will of its own. It simply is. And it’s certainly not my son’s fault that I feel challenged by so many things. I am the puzzled one, not him. And I think the sooner I completely claim that as my own issue, the better off I’ll be.

Beyond everything we want to do for our own children and families, most of us want something else, too. We want to create something that reaches beyond the four walls of our home. We want to leave our mark on the world, to leave a positive legacy that changes the world for the better and that will endure after we’re gone.

At least for me, this is where a part of me always feels more than a little empty. Maybe it is one of the hidden causes of burnout, at least for me. We want to do more than just get through the day. We dream of making a difference in the world, and when we can’t, we feel the loss of something essential in our lives.

But this is where I am trying to show grace to myself. Perhaps I’m not in a place to achieve the kinds of things I want to right now, but that doesn’t mean I will never be able to. With time and effort, I’ll learn and grow and hopefully get more of my crap together. The most important thing is to commit to the journey of getting there. And I hope you’ll do the same.

I know I’m getting better at this as time goes on. I am learning new things every day. I am getting wiser. I am figuring myself out. I am growing into my own skin. I am slowly but surely becoming the kind of parent I want to be. And I have two really good little teachers running around the house to help me.

I am often not the parent I want to be, and I am trying to accept this as just where I am right now. I am often not as present to my kids as I wish I was. I’m sometimes not a particularly good husband or friend, either. The dissonance between what I want to be as a parent and as a person and where I am now grates on me like an orchestra of out-of-tune instruments.

All I can do is learn from today and try to do a little better tomorrow. In the midst of everything going on, it’s hard to realize that this alone is quite significant. That commitment is absolutely essential, along with the belief that this – that I – will somehow be enough.

Comments

Inspiring post! Accepting we are where we are is a big step. Accepting we may not be ready to be everything we want to be is another big step. We often don’t even have the time or energy to reflect on how much we’ve grown as parents. Keep up the great work, and thanks for reminding me of all of these important things!

So very well stated. This brought a lump to my throat as it echoes my heart. Yes. Things are what they are. I’ve come to terms with the fact that my singular job is to make the best of things for our son, my husband and ultimately myself. But this does not come without a high price. I strive to find balance (in creativity) and respite, but rarely do. Sleep is elusive, but absolutely much needed. I live for the possibility of 7 blissful, uninterrupted hours. The occasional nights i get it give me hope!

This is the life God has given our family (through adoption). There is glory to be given. If I focus on that, I’ll be okay.

Thank you for sharing. It’s so comforting to know we do not struggle alone.

Love this. Perfection again. Especially, “I am the puzzled one, not him.” Ain’t that the truth? Our kids are a puzzle to us, but naturally, the probably know themselves pretty darn well. Part of the exhaustion each day is staying on top of trying to make sure that your child knows you are trying, really trying to understand, let alone all the rest.
Went through a long period, for about the first 2.5 years of the not even 3 years my son has graced the planet frequently fighting sleep multiple times per day, every day, white-knuckling my steering wheel, afraid to fall asleep, almost falling sound asleep at my desk at work. I’ve had a couple months lately of getting just enough sleep to overcome that sort of fatigue – but I am not taking it for granted it will last.

I don’t know the answers either, but I can tell you what has happened for us. My son’s sleep varies with how well his meds are working. When they are working well, he sleeps almost as much as a typical kid his age–sometimes (rarely) he’ll even sleep in like a teenager. When they aren’t working, he sleeps very little–one summer he was down to two hours a night. He’s fifteen, and the good news is that over the past couple of years he has gradually stopped needing or insisting on company when he gets up in the night. Now he usually plays his GameBoy quietly and stays out of trouble (he used to trash the basement every night) until we get up.

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